Repetitive strain

I've been diagnosed with repetitive strain in my hands and wrists, so I'm hoping to get speech-recognition software!

When I thought about the diagnosis -- repetitive strain -- I couldn't help thinking that the words 'felt' a lot like the experience of raising a child with disabilities. And the strain doesn't come just from the child's challenges, but from attitudes and physical barriers and cultural expectations about what matters.

We like our disabled kids and their families to be working on stuff, to be improving, to have goals and accomplishments. To be all they can be! Don’t get me wrong – where we were 50 years ago is unthinkable. But why is it that families with disabled kids, and the kids themselves, are encouraged and rewarded for working harder than everyone else around them? The tasks are one thing – compound them with expectations, grief, lack of sleep, managing schedules, integrating team members, medical emergencies…

I drank the kool-aid for many years before finally, happily, giving it all up. Contrived, monitored, critiqued exercises gave way to joyful, authentic, meaningful experiences. Are you wondering, Is she really saying this? How could she not want these things for her son?!

Trust me, it’s not that I didn’t. I just decided that the cost was too high. For both of us.

When I am near to despair over Sophie's seizures I practise tonglen by breathing in the sufferings of all the mothers I know who have children that seize and all the mothers I don't know who have children that seize. And then I breathe out. I breathe out love and compassion and health and happiness for all those mothers and all those children. I believe that embracing suffering, meeting it, accepting it and even embracing it might lead to understanding it, and that understanding connects me, deeply, to others.

"My advice to other disabled people would be, concentrate on things your disability doesn’t prevent you doing well, and don’t regret the things it interferes with," he says. "Don’t be disabled in spirit, as well as physically.